The sunlight seeps soft through the womblike redness of my closed eyelids as I ease into consciousness.
Can I actually feel the crackling dislocations from my elbows to my fingertips, or is it simply familiarity, the recognition that the slabs of meat at the ends of my arms must somehow still belong to me, even if I can’t control them right now? I blink languorously, eyelids plinking together. How can I be more tired waking up than I was before I fell asleep?
I say the names of the bones to myself in a chanted catechism as I will myself to sit up. Lunate, scaphoid, triquetral. My tongue tap dances along the backs of my teeth and I wriggle against the pillow without using my hands. Capitate, pisiform, hamate. Once steady, I interlace my fingers, stabilize my left hand with my right, then pull and twist simultaneously. The movement is rote memory. Lightning bolt bright explosions implode within my hand every single goddamn time. There is a machine-gun chatter of bone against bone and I don’t realize I’m grinding my jaw and holding my breath with the hurt until I have to unclench and inhale. The sound of re-location echoes in my room — all of Oakland must be able hear it — before I switch, bracing right hand against left this time. I pull, twist, and my nerves scream in protest as the blood flows back into my hand. Each pale finger bursts into bright crimson bloom, tributaries abruptly flooded with color and the feeling that inevitably follows. There is an electric tingle like brushing wet skin against a light socket as I pop my thumbs back into place, then encircle my wrists and watch my ulna and radius forcibly realign. My elbows follow suit obediently, eventually, and I am grateful they don’t require more coaxing.
There is an electric tingle like brushing wet skin against a light socket as I pop my thumbs back into place, then encircle my wrists and watch my ulna and radius forcibly realign.
Breathe.
Once my hands are back together, I plant them on the sheets and twist my torso. Each vertebrae jumps back into place, an answering cacophony to the call of my hands. It feels like stacking books on a shelf until their spines are carefully aligned with the edge.
Eventually, slowly, surely, I sit up fully. I slip my fingertips beneath my scapula and crunch my ribs back in place. I roll my head in tiny circles until my neck no longer creaks. My ankles pop like bubble wrap and if there weren’t two screws in my left foot, anchoring my toes in place, they might add rifle-shot cracks to the discordant symphony of my skeleton. I swing my legs over the edge of the bed and shuffle into my slippers.
I keep the pain pills in the second drawer on the left-hand side of the bathroom sink, through the bedroom door and down the hall on the right. If they sat on my bedside table, right there beside me, within easy reach (once my hands were realigned), I might never make it off the mattress. The rattle of round pills against child-proof plastic is sweet harmony, a chorus of angels whispering against the seashell curve of my ear. They fall into the palm of my hand, sweet manna from heaven, and dissolve bitterly, beautifully beneath my tongue.
One of my earliest memories is as a toddler in the hospital, and the razorblade burn as they snaked a catheter up into me to help empty my bladder.
The pain of that urinary tract infection looks like bright, white, focused light and the weight of my Mama holding me as I screamed. The hospital is not an uncommon setting for my childhood memories, because there are so many other surgeries: a broken collarbone, stitches striped up my forehead in a scar that makes me self-conscious as a teenager, eye surgery after being declared legally blind. Scars remain in the places where my memory has evaporated like pools of rubbing alcohol. I am too young to have so many injuries, and the doctors label my mother negligent while the nurses cluck their tongues when she brings me in yet again. She is not a reckless parent; I am simply sick and undiagnosed. I will remain that way for decades.
Scars remain in the places where my memory has evaporated like pools of rubbing alcohol.
I grow older, and the hospitals are replaced by memories of rooms full of fellow elementary school students lined up in neat rows as we stood, backs against the walls, to be tested for scoliosis. I knew that my bones were curved, sinuous and slippery, because the doctors had already told us. I welcomed the escape from the tedium of our regular classroom routine and thought little more of a test that told me nothing new. It didn’t hurt yet — not more than anything else I’d been through, anyways — so I didn’t have to worry.
I grow older still, and my middle school years are defined by the hissing suck of the refrigerator’s rubber seal as I slip the protective plastic case containing the glass vial of human growth hormone and its syringe inside the artificial chill. Sleepovers meant an inescapable conversation with someone’s mom to explain why I was bringing needles over to spend the night. Sometimes I would sneak into the bathroom to inject the drug into my stomach or my hips; sometimes my friends watched the process, rapt and only slightly disgusted. The endocrinologist asked me questions about my absent period that made me squirm. His queries made me compare myself to friends who had already begun puberty, as if the flat line of my chest and tiny stature weren’t already stark reminder of how far behind my body lagged. Eventually, I refused to see him again, missing out on adding inches to my stature as the hormonal help ended.
In high school, I arch my back against the hard metal of the chair attached to the desks, feeling the deep ache in the curve of my spine. Some days I’d skip homeroom and drive my emerald minivan across the bridge until I found an expansive parking lot where I could sleep in the backseat without being noticed. Cool breezes fluttered in from the cracked back windows but none of it made the hurt go away. When I talk to a doctor about feeling so low, I don’t mention the pain — no one has connected any of the points into a cohesive constellation yet. He points out the pin on my lapel, a round button proclaiming my love of The Cure, and asks me if I take a lot of MDMA, listening to a band like that. I laugh in his face and never come back.
When I talk to a doctor about feeling so low, I don’t mention the pain — no one has connected any of the points into a cohesive constellation yet.
In college, the shame of calling out of work yet again burns bright. I wonder if the heavy plastic trays of food I hoist onto my shoulders were the reason why my whole body sometimes protested so vehemently I couldn’t even get out of bed. I feverishly save my tips, cycling through every brand of mattress topper available, but none seem to help. I email my professors to tell them I am unable to move from my pillows, much less sit up straight behind the wheel of a car, which means there’s no way I can drive to campus for class. Sometimes I drag myself to the doctor and beg for any kind of answer. Instead, they recommend I see a chiropractor and write me a note that excuses me from class.
After college, as a bonafide adult, I revisit my childhood spent in the emergency room. One night, I check myself in after two weeks of hitching gasps on dislocated ribs. I beg the intake nurse to help me slide them back into place, long enough so I can take a deep breath. Breathing feels like sucking oxygen through a blocked straw. Instead, two nurses and a doctor corner me. They proffer pamphlets that explain the link between narcotics and addiction; they encourage me to get myself clean. I tell them I don’t want narcotics, but they’re convinced they have me figured out. On the way out, one finally touches me and exclaims in surprise when he feels my rib cage shift. I sob painfully in the car as I drive home.
The diagnoses that came first were the ones that are always applied to young humans with uteruses who complain of inexplicable pain.
My medical record fills with words like conversion disorder, and hysteria, and hypochondria. Someone as young as me shouldn’t — realistically couldn’t — possibly hurt this much. The doctors can’t see my pain, which means they can’t measure it, either; obviously it must not actually exist at all. A primary care doctor finally refers me to a neurologist so he can wash his hands clean of me, and this doctor grants me the gift of a word that seems to fit: hypermobility. He shrugs, tells me there’s nothing else he can do for me. He doesn’t realize the benediction he has offered in the form of a diagnosis.
Someone as young as me shouldn’t — realistically couldn’t — possibly hurt this much. The doctors can’t see my pain, which means they can’t measure it, either; obviously it must not actually exist at all.
The salt of my tears cut channels through the foundation I patted on my cheeks to cover up the deep, dark half-moons of exhaustion beneath my eyes. I frantically search for more information in my ear, scrolling with one subluxed finger through pages describing collagen disorders. I see myself reflected in the words, each sentence strung together like pearls I could drape around myself to describe the mystery of my hurt. It is like that perfect, tiny moment of ecstasy when a word you couldn’t think of for days finally pops into your head unbidden. My heartbeat rings out like a hammer against steel, my bones reinforced with the titanium resolution of an almost-answer. I am suddenly dogged enough to fight harder, brighter, bolder for that which I now know to be true about myself and about my body. I am not quite there, but I am close.
I see myself reflected in the words, each sentence strung together like pearls I could drape around myself to describe the mystery of my hurt.
I am twenty-six years old and sitting in the bright primary colors of the pediatric ward in a hospital basement with no reception when a young geneticist with olive skin approaches. He wears a crisp white coat and I am distracted by the flickering sparkle of a tiny diamond in his earlobe as he diagnoses me, finally and conclusively, with hypermobile Ehlers-Danlos Syndrome (hEDS), a collagen disorder that can cause severe implications across the entire body and every system therein. He gives me a reason for my UTIs as a toddler, my eye surgery, the broken bones and random joint dislocations, the pituitary growth hormone deficiency, the unrelenting pain.
Along with the diagnosis comes the reality of my existence, combined with a slew of co-morbidities: dysautonomia, Complex Regional Pain Syndrome, facet joint disease, endometriosis, fibroids, dysphagia. There is a fatal flaw in my DNA and no cure for any of it; there is barely medical recognition, much less functional literature approaching a fix. The hEDS comes with an inescapable promise of more surgeries, and unavoidable complications from those surgeries, too. My jaw dislocates and stays out for 16 weeks before I am wheeled into the cool brightness of an operating room. My big toe dislocates and is eventually forced back into place with two screws. We ablate my nerves with radiofrequencies to try and deaden the sensation of pain and inject lidocaine into my muscles to try and prevent their uncontrollable spasms.
There is a fatal flaw in my DNA and no cure for any of it; there is barely medical recognition, much less functional literature approaching a fix.
A golf-ball sized cyst encroaches onto my right ovary and a fibroid invades my fallopian tube. A surgeon removes my reproductive organs, accidentally perforating the thin and friable tissue of my damaged uterus during the procedure. Every time a surgeon operates on my body, I ask them to take pictures of the places inside me that are broken. I clutch the images of my snarled insides to my heart as if they were pages ripped from a holy book. After years of being told it was all in my head, concrete proof of my pain’s existence is precious and perfect and makes me cry.
I become someone who is hyper-aware of my existence as a human with a body in constant rebellion. My body may be myself, but it is not my own.
My diagnosis is new when a well-meaning, nondisabled friend tells me that I’m going to “think myself into a wheelchair” if I keep talking about eventually needing one, and I can’t stop imagining her face as I look my doctor in the eye and tell him I’m not leaving his office until he refers me to a specialist to be fitted for one.
I’ve been asking to see a specialist now for months, unable to visit art museums or see concerts without my hips and knees and ankles dislocating, or my eyes blurring with the grainy darkness of near-syncope. Even the stout wooden handle of my cane, adopted as near-permanent after foot surgery, cannot keep me upright. He tells me that he is concerned I will become “too reliant” on the wheelchair, but he finally stops arguing when he sees the resolute set of my jaw that day.
Six months later, I am gripping the handrims of my new wheelchair. My cheeks already hurt from the uncontrollable grin spread across my face, but I cannot stop smiling. Even in the small space of the specialist’s office, I zip from corner to corner and back again, learning to maneuver my body in its new vehicle. I gave up long distance running long ago, after finally accepting that my ankles would never stop dislocating with each slamming step on concrete or treadmill, but have craved the endorphin rush of a runner’s high ever since. The speed and sure agility of my wheelchair provide the surety of that high.
Even in the small space of the specialist’s office, I zip from corner to corner and back again, learning to maneuver my body in its new vehicle.
The inaccessibility of the world serves as a sobering reminder of my limitations, however. It is not moving through the world on wheels that slows me down; I am faster, spry and more lithesome perched in my seat than I have been for years on my feet. No, it is the world itself. It is the sidewalks without curb cuts, the doors without automatic openers, the bathroom stalls too small to fit my chair inside, the entrances with stairs and the ramps around back (if they exist at all). I go to the store and can’t navigate between the too-small aisles; I go to the movies and dislocate my neck in the accessible seating (after asking nondisabled people to move); I go to restaurants and stare at the wood of the bar as my friends tower on high-top tables above me.
I see the same inaccessibility reflected in the ableism of the sneering faces of people who tell me that requesting accessibility is asking for extra privileges, who illegally park in accessible spots and curse at me when I ask them to move, who laugh in my face and tell me my life isn’t worth living because I am diseased, disabled, and therefore somehow lesser, despite brokering a tentative peace with my unpredictable existence.
After the bitter, blissful pill melts beneath my tongue, my entire body is suffused with a gentle tamping down of the loud static screaming of nerves on fire and bones dislocated from the mere act of dreaming.
I step into the shower and turn away from the water, letting it run down my back until the bee sting prickling from my winged scapula dulls to a quiet roar.
I towel off, careful to dry my scarred left foot with only a featherlight patting of the towel, turning my face in the mirror to see the red scar that climbs up my jaw and into my hairline. So much of my body feels alien to me, like the swathes of skin that remain perpetually numb post-surgery, or a foot so painful that even a sheet resting on it is unbearable agony. My body, my diagnosis, means I am an intrepid adventurer exploring an undiscovered planet, with little warnings as to what local flora and fauna might hurt me — or how, but I am learning.
My body, my diagnosis, means I am an intrepid adventurer exploring an undiscovered planet, with little warnings as to what local flora and fauna might hurt me — or how, but I am learning.
I wing my eyeliner out from my eyes and darken my blonde eyelashes with mascara. I outline my lips in vibrant crimson, carefully tracing the jagged contours of my upper lip and the u-shaped curve swipe of my lower. I work carefully until I am fiercely plumed in war paint and warning signs, because makeup is one of the few ways I know to seize control of my mercurial meatcage. I pull on clothes and despite the siren-song calling of my bed, begging for my return, I head out into the world prepared to fight: the pain from my body; against a world demanding my erasure for the sin of not fitting in; and for accessibility, deserved, promised, but not yet guaranteed. I slip an extra pain pill into my purse and face the world, where every act of my existence becomes an act of resistance by simple virtue of being in my meatcage.
You Have a Body features personal essays on the the ways we reconcile our physical forms with our identities. This series explores how our bodies sometimes disagree with us, how the world sometimes disagrees with our bodies, and how we attempt to accept that dissonance.
I understand and appreciate the amount of work and love and labor you have put into raising us.
You and dad came to this country as newlywed young professionals, and together you were always fighting as a team.
You were twenty-one and scared and fought your way through the racist, sexist, classist, homophobic spaces of the west coast, carving a nurturing space for yourself and our family.
You are the lioness, protecting her cubs from each element that is threatening.
You and dad are the first to take on the offender when something fucked up happens to one of us, and I love you for that.
Your words are like tiny swords, each one cutting slightly and swiftly, but deeply.
What I would like for you to understand, though, is how deeply you wound me.
Every time I come home, you comment on my body. I have struggled with my body image issues since I was ten years old.
It doesn’t help me that you were the charismatic 100-lb, 5’4” beloved beauty queen of your community.
Or that even now, after having three grown children, and two grandchildren, you don’t look a day over thirty, thanks to daily applications of Oil of Olay and vitamin E.
But my body? My body is a road map of stretch marks, and I shrink and grow depending on stress, work load, my thyroid acting up, the time of the year.
Every time I come home, I am subjected to your close readings of my body.
Oh, beta, you would be so beautiful if only your belly were flat.
Oh, beta, don’t wear short skirts around the house. Nice girls don’t show their legs to anyone but their husbands.
Oh, beta, why are you single? All of your cousins are married. Your younger brothers are engaged. If you lost thirty pounds, you would find a nice boy.
MOM! You have no idea what my life has been like. I have internalized your words to the point where I wake up thinking about my midsection.
Your voice haunts me. I go to bed wondering when the weight training will start affecting change properly.
The last time I was in fantastic shape, I killed myself every day. I swam and played tennis and danced and ran five miles a day. I broke my body over and over.
I fucked up my back during a period of weight training. My body hasn’t been the same since.
I don’t drink soda, I don’t eat desserts, I don’t eat red meat, I don’t eat white flour, I don’t eat or drink any dairy, I don’t eat fried foods. I cook for myself every day, and I am doing what I need to do in order to survive.
You want to know what my pain is like? This bodily transformation I have undertaken has resulted in a pinched nerve, and a bulging disc, and nearly constant sciatica with shooting spirals of pain running from my lower back down my leg and ankles.
I could barely sleep, much less walk. I have done everything that you and dad said. Education above everything, no? Two BAs, two MAs. I finished a PhD.
All of this financed by myself, through grants and fellowships, based on my merits. And I am not yet thirty.
Graduate school has broken me in so many ways, and constantly being around blonde-haired, blue-eyed, slender, pale, privileged, entitled pieces of flesh does not help my body issues. You try living in X for five years, one of the ghostliest cities on earth.
You try teaching undergraduate students from the wealthiest feeder schools in X, who have never been in the presence of a woman of color who holds power over them.
These students look like Barbie and Ken. I cannot compete with them. I won’t compete with them. The worst part about your words is that you say them with genuine love and concern. You don’t have a malicious bone in your body.
You will tell me these things while we are taking a walk or while you are putting coconut oil into my hair. We can talk about everything under the sun, but when I react to your words with anger and offense, you claim to not intend to hurt me. You say that as my mother, you have every right to say the things you do.
I disagree. I call these microaggressions. Your biggest concern is for my wellbeing, but you seem to believe that I am starved for companionship.
You are haunting me. Your words echo inside my mind, constantly.
I don’t know if it is because there are three weddings happening at the moment in our enormous, multigenerational desi family.
I don’t know if it because you yourself are haunted by your mother’s words.
I’ve seen what Nani says to you. I’ve seen the pain that etches itself on your features.
I’m the oldest grandchild and the only single one, and I am a disappointment in spite of my many achievements.
I wish you wouldn’t bring this stuff up anymore. I don’t quite know how to tell you all of this and have you actually hear me. Crying doesn’t help. Threats to you that I won’t come home to visit don’t help. I’m tired of taking it and it is affecting my wellbeing. I wish you could hear what I am saying. I wish you would stop. I love you more than anything on earth and I wish you could love me the way I do you.
You Have a Body features personal essays on the the ways we reconcile our physical forms with our identities. This series explores how our bodies sometimes disagree with us, how the world sometimes disagrees with our bodies, and how we attempt to accept that dissonance.
People often talk about out-of-body experiences, usually during a dramatic scene on television or in a movie where someone is presumed dead but sees their life from the outside and fights to return.
I think this is a required scene for every season of Grey’s Anatomy, since someone on the brink of death gasps, choking in air, to symbolize the struggle it took for them to come back from the edge.
I’ve never experienced that. What I’ve processed is an inner-body experience. I understand both circumstances are the result of trauma, but one puts the victim on the outside, watching their person from above, whereas my inner turmoil is my body no longer recognizing myself. I’m internally and, perhaps, irreparably detached.
Were it not for the pain and the scars and the memory of stark white operating and exam rooms where I was told to just breathe, I’d believe all of this happened to someone else.
For the past three and a half years and seventy doctor appointments, I have undressed for an audience that poked, prodded, and studied me. The flesh on my chest has been cut into, pectoral muscles separated from my chest wall—and later, reattached—and tissue scraped from clavicle to midway down my ribs, implants placed inside, removed, then replaced, fat moved from my thighs and abdomen to my lean and delicate chest, and the same cuts stitched closed four times. My abdomen has been scanned and surveyed thirty times to watch follicles grow in my ovaries, monitor a spot on my uterus, and leave doctors in a state of confusion when my small intestine decided to choke itself one day. I’ve been strapped to a chair-like operating table and flipped to a forty-five-degree angle so a doctor could delicately insert a needle to extract nineteen of my eggs that were then frozen and sent a hundred miles away for safe-keeping.
Were it not for the pain and the scars and the memory of stark white operating and exam rooms where I was told to just breathe, I’d believe all of this happened to someone else. It couldn’t have been my body that survived each of these visits where I laid myself bare. Mine would have never survived this.
Growing up, the rules of my house were conservative. Not in the political sense but in the way we treated and displayed our bodies. As a teen in the aughts, low-riding jeans were bought in secret but were too revealing for me to feel confident wearing them. My bikini bottoms were what stores called “full-coverage” and slinky, low cut tops were a pipe-dream. School was no different; each day I wrapped a knee-length plaid skirt around my waist, pulling it low enough so only a sliver of my thigh and kneecaps could be seen once I slid into my dark-tone knee socks. My high-cut V-neck sweater allowed my neck just enough space to feel unrestricted but hung off my shoulders like a shroud of secrecy. You could not tell the size or shape of anything underneath.
Even if the rules permitted otherwise, I felt uncomfortable putting my body on display. I chose to lay myself bare in other ways.
Even if the rules permitted otherwise, I felt uncomfortable putting my body on display. I chose to lay myself bare in other ways. I was talkative—outspoken, and even noisy. I deliberately sat in the front row of classes so I could see my teachers react to my challenges. I tested my parents’ patience by tip-toeing through the front door at six in the morning because the sunrises on the beach were too good to miss, but so was the sand I tracked in behind me. But the teenage boys I was galivanting with never copped a feel under my shirt and attempts to unhook my bra were futile.
I was not prude, though. I was careful—selective of the parts I allowed people to see, in fear they would tarnish, rather than admire, it. It—I—was delicate; I thought in only revealing small parts of this body I carried that I could protect it from hurt.
I was careful—selective of the parts I allowed people to see, in fear they would tarnish, rather than admire, it. It—I—was delicate; I thought in only revealing small parts of this body I carried that I could protect it from hurt.
And then I learned the body I spent twenty-seven years protecting had been damaged since its conception. Inside, my DNA was flawed; I had a BRCA1 genetic mutation. What began as a blood test lead to me uncomfortably changing into countless seersucker robes, left open, so doctors and nurses could scan and swab my insides. Suddenly no amount of clothing could protect me from damage.
Since learning this mutation I inherited increased my risk of breast, ovarian, pancreatic, and skin cancer, I’ve underwent five surgeries to remove and reconstruct my breasts. Every six months, a woman named Antonina, who is gentle and kind, inserts a probe that scans my uterus, ovaries, and fallopian tubes. After she is done, I dress and then undress in a separate exam room, where a nurse-practitioner who has become a key part of my survival manually checks for abnormalities Antonina’s thorough scans might have missed. These women are looking for the start of ovarian cancer, often called a silent killer.
One minute of my life—the moment I learned my body was already damaged—changed how I show myself to the world. This new requirement—the discomfort of disrobing for perfect (but credentialed) strangers—forever altered my connection to my body, as well as what it’s capable of.
I had to let go the modesty I once clung to, removing my shroud and both the fear and reverence I carried underneath it.
Slowly chipping away at each doctor’s appointment and surgery was the body I knew as a thing of beauty, one that I revered, coddled, and protected, and transformed into an object of utility, a random piece of biology, a science experiment. I had to let go the modesty I once clung to, removing my shroud and both the fear and reverence I carried underneath it.
As I’ve peeled off the layers I’ve accumulated over the years, I’ve realized that our bodies carry more than they’re meant to, and I’ve been adding to that burden. Once I saw what my body can do, what it can recover from, the poking and prodding and nakedness unshackled me from the constraints I placed on myself.
Once I saw what my body can do, what it can recover from, the poking and prodding and nakedness unshackled me from the constraints I placed on myself.
For twenty-seven years, I coddled my body and underestimated its ability to endure, but the past three and a half years have taught me to give it freedom to pull me through raw, naked despair. But in this process, my body detached from my mind. I see the body I am attached to, but I’ve yet to make a connection to my new understanding of it. It remains foreign because it’s strength was something I never let it—or had to—put on display. When the nerves in my chest were severed during my mastectomy, my relationship to my body was severed as well. But nerves regenerate, slowly and not always along the same path. Perhaps the link between my mind and body I lost years ago will also grow anew.
You Have a Body features personal essays on the the ways we reconcile our physical forms with our identities. This series explores how our bodies sometimes disagree with us, how the world sometimes disagrees with our bodies, and how we attempt to accept that dissonance.
I’m twenty-seven years old and have never had a “good night’s sleep.”
From childhood through early adulthood, I struggled to fall asleep at night and fought to stay awake during the day. At its most extreme, my body would demand twelve-hour sleep-wake cycles: refusing to wake up until 3 p.m. and finally caving in to sleep at 3 a.m. Whether it was blamed on technology, caffeine, or another culprit, family, friends, teachers, and medical providers were convinced that it was me choosing to be this way. Part of me believed it, too. TV shows and movies reinforced these stereotypes in my mind. Yet, part of me found flaws in their accusations. The spontaneous bursts of nocturnal energy started long before I ever took a sip of soda or owned a cell phone.
When I turned twenty-three, I started to notice a shift: I began to never feel completely awake. Other chronic illnesses had prevented me from fulfilling my longtime dream of volunteering overseas for the Peace Corps so I did the next best thing: work with international students at a university. My body can’t handle humid tropics or arid deserts but a rural college town would be smooth sailing (or so I thought).
On one of my first days, I attended an early morning meeting with staff from another department. We started off with introductions and I enthusiastically scribbled each person’s details in my notebook, eager to foster this new partnership. Then I felt it. Unbearable sleepiness crept down my body, weighing my head and eyelids down like tar. I wasn’t sure what was worse: “admitting defeat” by putting my head down into my arms on the table to sleep, or enduring the awkward ebb-and-flow of my head with eyes rolled back and mouth hanging open. I figured that at least in the second case, I was somewhat upright and “attentive” (though probably appearing more like a propped-up zombie than a well-meaning professional).
I wasn’t sure what was worse: “admitting defeat” by putting my head down into my arms on the table to sleep, or enduring the awkward ebb-and-flow of my head with eyes rolled back and mouth hanging open.
This was my wake-up call. I knew something was definitely wrong. It’s hard enough to be taken seriously in the workplace as a woman of color spawned in the 90s. I am fueled to surpass expectations by every click-baity gripe about millennials on my news feed, every microaggression I’ve swallowed behind a forced smile. Embarrassment, frustration, and desperation drove me to seek answers from various doctors and test quirky tips from online listicles. I had cut out caffeine due to the onset of an unrelated heart condition. I tried wearing orange-tinted glasses to block out wakefulness-promoting blue light from electronics (but mostly just made me feel like a rebel pilot from Star Wars). Nothing worked. I would be so tired that the times that I could manage to call or email in to my supervisor to request a sick day, my slurred speech and nonsensical text led them to jokingly say that I sounded drunk. Coincidentally, the onset of my chronic illnesses had led me to become intolerant of both caffeine and alcohol.
This was my wake-up call. I knew something was definitely wrong. It’s hard enough to be taken seriously in the workplace as a woman of color spawned in the 90s.
After multiple misdiagnoses, two overnight sleep studies, two afternoon nap studies, and twenty-three years of self-doubt, I was diagnosed with narcolepsy. It took an average of seven minutes for me to fall asleep during the nap series; in one nap, I fell asleep after just 12 seconds! I had also experienced early rapid eye movement (REM) sleep in two of the nap sessions: one after 5.5 minutes and another after just four. To put this into perspective, it typically takes ninety minutes for a person to reach REM sleep after sleep onset.
My narcolepsy diagnosis was a double-edged sword. It was validating because I finally had “proof,” albeit just a medical term, to validate my struggles with sleep to those that had doubted me. I could get a doctor’s note to request accommodations at work. Yet, I soon realized that a simple diagnosis wouldn’t magically make the world empathize with me or work with my new lifestyle. I remember being stuck on the word “narcolepsy” when my doctor first diagnosed me. The only times I had heard it before were in comedic situations. A teenager face-planting into their bowl of Captain Crunch before school. A person slumping down into their chair mid-conversation with a friend. It was more of an old wives’ tale than a potential reality. I can see the gears turning in people’s heads when I tell them that I have narcolepsy. I feel like it’s a word that most folks have heard but never really processed. Narcolepsy is more complex than extreme bouts of sleep and people with narcolepsy are certainly more than running gags.
Sleep can be emotionally and physically draining for people like me. Some aspects of sleep can even be traumatizing. Recurrent, vivid nightmares throughout the night have left me feeling paranoid and jumpy well into hours after waking up for the day. Sleep paralysis is another symptom straight out of a horror film: I’m awake and blinking but I can’t move my body, speak, or breathe. Some folks see demons or hear scary voices when experiencing sleep paralysis. The unfortunate reality is that I have an unrequited love with sleep. I crave it constantly but only receive fractured, unrefreshing sleep in return.
I can see the gears turning in people’s heads when I tell them that I have narcolepsy. I feel like it’s a word that most folks have heard but never really processed.
Looking back on my life, I realized how little sleep hygiene was encouraged outside of family and doctors reprimanding me for my personal issues. In elementary school, we had school-wide “fun run” fundraisers and jump-rope competitions. Messaging on milk cartons, cereal boxes, and snacks emphasized each respective product’s contribution to a “balanced diet.” National campaigns promote physical exercise and conscious eating habits to people of various ages and backgrounds. Why doesn’t sleep carry that same weight? Would I have had a quicker, smoother route to diagnosis, treatment, and accommodations with more community education and societal advocacy? Would I have been spared from years of feeling like a delusional, worthless burden?
The unfortunate reality is that I have an unrequited love with sleep. I crave it constantly but only receive fractured, unrefreshing sleep in return.
I had struggled with depression and anxiety since adolescence. At first, I blamed my chronic illnesses for further aggravating my mental illnesses. I resented my nervous system for its inability to function properly, especially at the so-called prime of my life. I wasn’t one to say “no” to adventure. I wasn’t one to flake out on plans. I wasn’t one to show up late to work. I had become critical of myself for becoming the antithesis of the values I grew up with.
As I became more involved with disability rights, I realized that my embarrassment and frustration stemmed from the ableist structures and perspectives I encountered and internalized. Despite being regularly recognized for my initiative, efficiency, and innovation at work, I would be patronized for showing up thirty minutes late or sleeping at my desk during my lunch breaks. I hadn’t known about my rights to reasonable accommodations like flex time, restructured work hours, or nap breaks until I did my own research years later. Family would chastise me for spending family gatherings hidden away sleeping on a couch, rather than acknowledging how much effort it took for me to get ready, show up, and say my rounds of sincere “hellos” in the first place.
Friendships were the most painful gripes. Long-time friends grew uncomfortable with the new “fine print” that came with hanging out. If we went to a concert, I’d need reserved seating (no more mosh pits for me). If we went to a bar or coffee shop, I’d need to stick with water. If we planned a day of sightseeing, I’d need to schedule nap breaks in the afternoon. I’d still be excited to spend time together but these minor accommodations were deemed “boring” or “inconvenient.” If you think about it, many of the things our culture views as “professional” or otherwise “socially acceptable” are unnecessary, ableist, and classist. If there’s one positive aspect of having chronic illnesses, it’s that they’ve allowed me to become better at filtering out fleeting friends, silly “rules,” and shallow activities to prioritize the people, values, and hobbies that are worth my limited waking hours and energy.
If you think about it, many of the things our culture views as “professional” or otherwise “socially acceptable” are unnecessary, ableist, and classist.
Since the onset of narcolepsy, I’ve devoted more time to self-discovery and pursuing what fits my new lifestyle. I used to love the thrill of the outdoors, especially travelling to national parks across the U.S. Of all of the travels I’ve had, it’s the natural scenic areas that are most cherished and ingrained in my memory: from the humbling, giant sequoias of Muir Woods to the tranquil, almost surreal lotus paddies of Cambodia. It’s challenging for me to leave my house outside of work obligations these days because of my chronic illnesses. However, I’ve found that I can bring the outdoors in by tending to houseplants. Many people admire plants for their visual appeal or alleged purifying qualities. I appreciate them for their diversity and tenacity. Contrary to popular belief, many plants can be rehabilitated and eventually flourish with the right care and environment. You’ll often see mushy succulents, ratty ferns, and droopy begonias all bunched together on the same rack in the garden section of a big box store. You’d be surprised how many of those sad, worn-out plants on the sale rack can actually be salvaged.
Like humans, plants are not one size fits all. Even within the same family, different plants can have different needs. If you picture someone taking care of a houseplant, the image that pops into most people’s mind is someone watering it and maybe placing it near a sunny window. Like diet and exercise for humans, there tends to be a limited focus on water and light. The appreciation and corresponding care for each plant’s unique light, water, soil, aeration, humidity, and feeding needs allows them to thrive. It may be different or a bit more work than what you’re used to but there’s nothing like spotting a tiny new growth on a plant that you put effort into. This observation helps me push through times where I feel like I’m being “dramatic,” “inconvenient,” or “selfish” due to my narcolepsy symptoms. I can thrive, as long as my basic needs (however unique they may be) are met and the environment I’m in is conducive to my growth. People with narcolepsy can achieve great things and we need our families, friends, schools, workplaces, and communities to recognize and support that potential. Wakefulness does not equal worth.
You Have a Body features personal essays on the the ways we reconcile our physical forms with our identities. This series explores how our bodies sometimes disagree with us, how the world sometimes disagrees with our bodies, and how we attempt to accept that dissonance.
Fluffy. It was the one word that came to me as I watched myself on screen for the first time while sitting in my second-grade classroom.
The week prior, my homeroom teacher, Mrs. Koda, had filmed each student in her class present our book reports to the class. The theme was biography, and being filmed was a special first-time treat for all of us. Now, one week later, our class was gathered in the school’s media room, paper cups of popcorn in hand, to watch the video of class presentations. It was a treat for all of us to see ourselves on screen, but I was especially excited: a bit of an attention-seeker by nature, I had put together a makeshift costume for my presentation, on Madame Curie, and decided to present as the Nobel Prize winner speaking about her own accomplishments. I couldn’t wait to see my white lab coat, large round plastic frames, and the bright pink lipstick I snuck from my mother’s dresser slathered on my lips. (In case you’re wondering, no, Madame Curie was not known for her taste in bold lip colors. I had swiped the lipstick off my mother’s dresser the morning of the presentation and had yet to learn that bright Barbie pink is not and will never be my color.)
Nonetheless, about twelve or so presentations in, my teacher’s off-screen voice finally announced my name, and I looked eagerly at the screen, the fluttering excitement in my stomach freezing up quickly in shock. The girl who walked in front of the camera looked nothing like me— though she wore my costume, glasses, lab coat, horrendous lipstick and all. Though she responded to my name and presented the book report I had prepared, she wasn’t— couldn’t be me. Dark-skinned and shiny, this girl seemed to take up more space in the frame than each of the classmates who presented before her. She was what I could only describe as “fluffy,” from the cheeks, the neck, the arms and hands poking out from each sleeve of the stark white lab coat, which in itself seemed to function to conceal something larger in size than what was needed by my classmates.
The girl who walked in front of the camera looked nothing like me— though she wore my costume, glasses, lab coat, horrendous lipstick and all. Though she responded to my name and presented the book report I had prepared, she wasn’t— couldn’t be me.
I remember feeling a hot flush wash over me a few minutes into the presentation, coupled with the queasy feeling that I did not like what was happening and wanted it to stop. Towards the end of her presentation, I silently willed this large, dark girl to stop talking and just walk off camera. What almost made the situation worse was that no one seemed to catch on to the horror of it all. From the classmates who applauded at the end of my presentation like they had the others, to my teacher who loudly praised my self-confidence and creative costume, not one other person seemed to notice how strange this person was, that she wasn’t— couldn’t be me. It was as if that monstrosity was just who I was, the person who sat in my seat, who my classmates interacted with every day.
This experience marked the first time I can remember that I began to split myself away from my image.
“She” was “me,” a me who I kept at a distance, a me who became perpetually disappointing. “I” was the real me, the voice inside who found “her” intolerable. At eight years old, I had learned early to do what so many women rely on to survive in our world: to make an enemy of the “she” I met every day in the mirror, who smiled back at me in the photographs of my friends’ binders in high school, and dorm room walls in college.
At eight years old, I had learned early to do what so many women rely on to survive in our world: to make an enemy of the “she” I met every day in the mirror.
“I,” the critic, the judge, the police officer, would decide that, on a given day, my cheeks were too big, my makeup wasn’t right, I looked like a child, I was shaped like a whale, I came off as awkward, didn’t fit in— the list goes on. And I would walk through the world in a body that I could not— would not— fully own, reinforcing this chasm as I grew older.
As someone who loves to write, I began making a habit of filling the pages of my journals with caustic entries I would revisit years later in horror. I’d call myself names, scribble long paragraphs about my workouts and my food logs and my weigh-ins, peppering them with reminders to toughen up and work for the body and face I wanted. I saved simple joys in life to enjoy after the day I’d finally will my body into submission. I started up cleanse after cleanse, fad diet after fad diet, living my life like a kind of balloon bouncing between the high of a few pounds lost to the crushing lows when I’d yet again hit a point when I couldn’t make cabbage soup, lemon and cayenne pepper, or grapes and milk last longer than a few days. Then I’d blame myself: I simply lacked self-control. I didn’t want it bad enough. You gotta do what you gotta do, tough it out, get with the program.
Disowning your own body when it does not answer the standards of the critic means abandoning it; I learned this many years later. Internally, and with the desperation that came with envisioning the golden number, 125, less as a goal and more of a saving grace, “I” did the work of disowning “her,” that confident, creative, dark, “fluffy” girl on screen. I began a relationship with myself in which I found a home (albeit an uncomfortable home) in living a segmented life. It was as if I had grown accustomed to an existence akin to the image of a person looking into a shattered mirror to see many versions of herself reflected back. And as I grew older I began to realize that the shattering was no longer a phenomenon relegated only to my body issues that went without consequence. The shattering had established itself as a pattern in my life, reverberating in so many other places in which I managed multiple selves, with multiple different feelings about a given concern or issue: my relationship with my family, my status as a first-generation American, the conflicted feelings I had about myself as a woman, the qualities I had and wanted to have, the kind of people I looked up to, the feeling of never knowing what I wanted. The question here is not about the shattering itself, but more about my inability to see it as something that was anything other than normal.
I began a relationship with myself in which I found a home (albeit an uncomfortable home) in living a segmented life.
Many years later, natural curiosity would lead me to explore concepts such as W. E. B. Du Bois’ theme of double consciousness, Homi Bhabha’s theory on hybrid identities, and Uma Narayan’s words on epistemic privilege, all of which had used theory and philosophy to discuss different aspects of multiple selves, or shattering, as they affected different groups in our history. I began to see the shattering as a consequence of my positioning in the world: woman, South Asian, first generation, Muslim, chubby (my vocabulary has become a little more refined since second grade).
I went to college, where I didn’t try very hard, to work, which made me feel like a prisoner, and to grad school, where I tried so hard I burnt myself out.
I looked for myself in everything I read in this stage, found answers that broke my heart, learned for the first time to have compassion for the many people I have been, for the many people around me who may not be exactly like me but in whose struggles and positioning I felt feelings akin to the nostalgia, anger, hope, resilience, and sadness that were so central to my experience. The voice inside aligned itself with this shift, and I started to force it, literally force it, at least in the beginning, to praise the body it had abused without hesitation for so many years. I started, in my decision making and through my actions, to apologize to it, to show it the love and compassion it had craved for so long. At the same time, I started to see the power of the voice in matching the voices of others who, too, began to rightfully see their positioning, or perhaps their own shattering of different forms, as the outcome of a world that was not merciful to them.
I looked for myself in everything I read in this stage, found answers that broke my heart, learned for the first time to have compassion for the many people I have been.
Mad Men is the only show I have ever watched the way I read novels, revisiting dialogue, tearing apart characters and searching for hidden motivations for their decisions and interactions. Sally, one of the main characters, is the daughter of the protagonist, Don Draper. “I’m so many people,” she once said, sighing, still a young girl in the process of internalizing or numbing herself against all of that which would continue to be unfair, to dehumanize. That line, from this character, has stayed with me. I am, and have been, so many people.
In my late twenties, I began to retreat into myself. Wary of fighting, of working against, I moved back home and began to work from home as well, the very childhood home in which I first learned to live as many people. I haven’t gone out much the past few years, haven’t socialized the way I would have expected myself to. I, always desperate for adventure and discovery, somehow found myself becoming a homebody. In my quietude, in the repetitious nature of a predictable life, I began to stitch up the tears that had come to represent the many parts of me.
Some may call this state depression.
I certainly had undergone my share of depressive feelings while in this space: What am I doing, why can’t I seem to even want to go back out there? What is going on with me, why does being here feel so right? At the same time, I felt a sort of reunification with myself, the feeling that the different parts of me were meeting each other, joyously, after a long separation. Can some depression be like that, like answering the calls of many voices asking to be with one another again? I am connected to that second-grader today, I find different dialogue for her confrontation with her on-screen image, and I have done the work of making myself whole again, in a world that is better for it.
You Have a Body features personal essays on the the ways we reconcile our physical forms with our identities. This series explores how our bodies sometimes disagree with us, how the world sometimes disagrees with our bodies, and how we attempt to accept that dissonance.
At eight years old, I sat in church while the pastor informed the congregation that a wife’s body did not belong to her, that marriage meant that her husband owned her sexuality.
I doubt this was the first time I had heard this sermon, but it juts out in my memory. I sat stiffly in the pew, every inch of my skin hurting. It isn’t fair, I couldn’t say. I don’t want that, were forbidden words. The future I was being offered was the present: my body belonged to men now, and it would belong to men in the future.
I was raised to love a God that asked me for everything. My life, my body, my wants, my desires, my goals, my dreams, everything a person could possibly call theirs, God wanted all. The language of my Evangelical faith was, Less of me, more of Jesus, and, Not my will, but God’s. You surrendered to God, you died to self, you released all control and let God define you. And it was God that said that I would grow up to marry a man and give my body to my husband.
I was raised to love a God that asked me for everything. My life, my body, my wants, my desires, my goals, my dreams, everything a person could possibly call theirs, God wanted all.
There was no raging against this. As much as it hurt, as sick as I felt listening to those words, it was a sickness akin to grief: an acknowledgement, a resignation. This was the truth, commanded by God himself, and no small child had any power to change it.
I could only relinquish myself. This was the one line in the sand: obey God or rebel. One led to contentment, happiness, fulfillment. The other pain, destruction, and hell. All that was required of me as a child, the only thing I needed to learn was how to obey better. Obey the Lord. Obey my parents. Obey authority. And one day, my future husband. There was nothing else.
The sexual abuse took my body before I understood I had one. It was part of my formation of consciousness, how I categorized the world. What houses looked like houses where children were being hurt? What men looked like men who loved their daughters too much? Why did so many girls look like they deserved to be spared when I certainly didn’t? I made these assessments with the casualness of familiarity. By the time my parents were separated, and it was my second oldest brother leading me off to the bedroom, I had no sense that I could say no. It simply was. I’d trained myself into empty boredom. Bodies tune out consistent stimulus. I dissolved into nothing.
I had no sense that I could say no. It simply was. I’d trained myself into empty boredom. Bodies tune out consistent stimulus. I dissolved into nothing.
I was handcrafted by God to be a girl. It was my mother’s prayer. In the terror of an abusive husband and the chaos of two sons, she wanted the innocence of a girl, the quiet calm of a daughter, whole and set apart from the trauma of abuse. So God created me for her. I was an infant so beautifully still, so sweetly quiet, my mother could forget she was holding me in her arms. An answer to prayer.
But I was also girl; my mother put on me the predilections of what she saw as feminine traits. My emotions were suspect, held up to scrutiny to determine whether they were true or had hidden motivations. Spoiled, prone to dramatics, feigning illness and weakness. A cunning child, willingly provoking her brother to violence for the sheer delight of getting him in trouble. My anger was an intentional cruelty I inflicted on my family, my tears manipulative attempts to avoid punishment. When my mother reflected on my childhood, it was with the assurance of her parenting skills; I was bad, but she had made me better. I was lazy, rebellious, manipulative, and she taught me obedience.
I was not a teenager, my mother pointed out with pride. Teenager meant self-exploration, independence, rebellion—all things that contradicted the relinquishing of self. The only lesson on defying that God taught was how wrong it was to defy God. So why not skip all that? Why not jump ahead to the right conclusion and avoid the misery?
For once my mother was proud of me. I received praise from her when I scorned my childhood self and called her a spoiled brat. Who else but someone who loved truth, whose thinking wasn’t clouded with self-interest, would be willing to acknowledge how wicked they had once been? I was wise now, someone who cared about logic before emotion. I disconnected so deeply from any felt experience that I insisted to myself that I was not hungry if I had just eaten, I was not tired if I’d slept through the night; these were facts. The body—the flesh, as our Christian faith called it, in all its carnality, only wanted to trick us, and I was not going to be tricked.
I disconnected so deeply from any felt experience that I insisted to myself that I was not hungry if I had just eaten, I was not tired if I’d slept through the night.
I had to rearrange my feelings to match what I was supposed to feel. The only trauma I was allowed was “a girl without her father,” and everything I experienced was assigned to it. Any other problem was merely physical. I was inexplicably sick a lot: headaches, stomachaches, allergies, and a chronic case of PMS my mother insisted could plague me all month long.
It is easy to feel afraid and call it being cold. Sadness simply becomes exhaustion. The wish for death a Christian’s desire to go home to heaven. It’s not that I was entirely unaware that begging God to kill me had no spiritual motivation. But when I slipped up, when I admitted to myself what I really felt, I had to go back to the process of making my emotions line up correctly.
I was a girl. I wanted a boyfriend. There was no question. It was easy to be this way, to logically reverse emotions. What did I feel toward boys? Attraction. What was attraction? What I felt toward boys. There was no conscious effort on my part, no confusion or doubts. It didn’t matter that I hated these things. They were so. They were determined by God and I had no fight in me.
It is easy to feel afraid and call it being cold. Sadness simply becomes exhaustion. The wish for death a Christian’s desire to go home to heaven.
I was solidly an adult before I could finally tell others about the sexual abuse. I worried that my mother was right; I was manipulative. Because to talk about the abuse was to intentionally recall the trauma, to bring to mind the kinds of chronic pains our bodies let us forget about. I didn’t have to do this, so didn’t it, by definition, mean I was playing the victim? It felt less like I was tearing down the walls to find the fresh, real, spontaneous self underneath. I was making myself climb back into my body and teaching myself how to map those feelings into emotional expressions.
Abuse survivors are often handed a narrative that says: there is no such thing as the complete destruction of the human soul. No matter who hurts you, no matter how broken you might be, you can’t help who you are, the reality of you. There is always a before to get back to, a version of yourself that exists untraumatized that you merely need to find. If any part of you is still affected by the trauma, then you have not arrived at your real self.
What did I feel toward boys? Attraction. What was attraction? What I felt toward boys… It didn’t matter that I hated these things. They were so.
What of me was unaffected by the abuse? What self existed prior to it? No one cared if the trauma was what caused me to say, I am straight, I am a girl. No one asked me if I should separate myself into pieces to determine their uninfluenced truth.
I couldn’t tell you who I was, only what I wanted. When I said, I’m attracted to women, it’s because the idea sounded so good. I wanted to be; it was the first time I imagined love as good. Was that the abuse talking? Someone who runs into the arms of women to avoid their trauma with men?
When I said, I am non-binary, I did so because it felt right. It meant I could conceive of my body as a home, something I could change and transform into a livable space. Does it make too much traumatic sense, the chronically dissociated survivor, calling themselves non-binary? What proof can I offer anyone that this is my unchangeable soul?
When I said, I am non-binary, I did so because it felt right. It meant I could conceive of my body as a home, something I could change and transform into a livable space.
None. But I’m more inside my skin than I ever was before. I have dimension, solidity, a sharper sense of my skin. What more is there to owning your body other than finding what makes it easier to live in? I’d accepted for so long narratives that said that easier was cheating, that healing meant forcing yourself into what made you miserable or afraid because it was good for you, that who you are was somehow different than who you want to be. And yet I cannot deny how much easier it is for me to look in the mirror now and say, I am me.
I looked at God and said, I am mine. I take back everything. No more surrender, no more less of me, no more resignation to who I’m supposed to be, whether I like it or not. Obedience taught me how to surrender myself and rebellion is my refusal. There is nothing more rebellious than the word no. No, I did not deserve the abuse, no, I am not my mother’s daughter, no, I will not marry a man, no, I belong to me.
It is incremental. I spent so long comfortable with being uncomfortable, so used to contorting myself into obedience. But I am teaching myself to resist, shaping myself so that my body feels distinctly separate from others. I am no longer without form and void. I called myself into existence. And it was good.
You Have a Body features personal essays on the the ways we reconcile our physical forms with our identities. This series explores how our bodies sometimes disagree with us, how the world sometimes disagrees with our bodies, and how we attempt to accept that dissonance.
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